Monday, 31 December 2012

Dear Alex, Goodbye to 2012!

31st December 2012

Dear Alex,

What a year 2012 has been...

It began with you starting to wake from
The coma you'd been in since the beginning of October 2011. It's ended with you sleeping for the first time in our home!

It's been a year of hopes and tremendous despairs.

I still have no idea how I can smile whilst harbouring loss and grief and heartache at the same time...

A year of learning, myriad lessons! Of striving, completing, opening and being defeated...

Of learning to let others in, accepting the offers of help with humility and gratitude.

Of reaching limits, but having to continue and break through them nonetheless!

A year of triumphs, you got up and walked, heavily aided, but that was never meant to be!

A year of set backs, still in the nursing home, still no home for me, you and the kids to be a family together.

A year where I've had my faith tested, I've reached out to the Most High, He's been there, heard my cries, even though sometimes it's taken a while for me to look back and see.

I've learned to fight, and that I am a fighter...and I'll continue!

I've learned to be still in the chaos and love and love more and despite and wherever and however, just love and love all the more...

...That I have to be the strong one, no matter how weak or lonely at times I feel...

That friends, family, strangers from near far, that kindness is a strength, it gives strength and you have all kept me afloat...

And gratitude. For every tiny little thing. In everything, be grateful. In all I do, in all I have and all I am striving for. Be grateful.

I'm carrying this through for my New Year's resolution, see how far I can go with gratitude! See where it takes me...

The bliss in simplicity is what I think I have truly found, and how powerful love is...

May 2013 be an extraordinary year for everyone, health and happiness and peace to you all!

Tamsyn x

Sunday, 30 December 2012

Dear Alex, Beautiful love

Beautiful Love

Just hours it took for our whole world to change,
You weren't going to make it
Weeks till doubt lifted.

Strangled and frightened
I race down the beach
Pleading with God to save you,
keep you in my reach.

Wedding ring I give you day-in-day-out to hold,
Broken and lonely not knowing what would unfold.

Ten years we lived, we laughed, we cried, we built
Children blessed and devoted love
Our life's patch work quilt.

Just hours it took to rip you away, that life,
Love as I knew it,
And forged a diligence to our wedding vows.


And my beautiful love, our beautiful love
I watch it grow more in every way
The bud that is you inside
Nurturing it everyday.

Oh how I have loved you,
Loved you coma deep,
Unable to move,
Unable to speak.
I have loved you through anger and pain,
Loved you through loss and a soul strained
Loved you through searching for how to continue,
Loved you through hating what it had all become
Loved you through daily battles, fears, anxieties and 'I really can't go on'

And I will love you for eternity,
Until our battle's won.

Friday, 28 December 2012

Thought for the Day #4

Thought for the Day has to be a great one for going into the New Year. Personally, I want to be pushing myself like never before, challenging myself beyond sitting happily in my behavioural habits. Challenging who I am and how I am and DO something about it! 2013 is going to be the year I march, taking no prisoners! The year I bring Alex home. The year I reach, seek, look and dream...

Tamsyn x

Thursday, 27 December 2012

The most AMAZING photos ever of Alex!

This Christmas went like this in the evening!

How amazing is his 'I'm home' smile?!

Dear Alex, my Christmas wish came true!!

26th December 2012

Dear Alex,

Thudding knowledge, it's time. And saying goodbye has never ever been quite so hard as it was tonight. You feel it, time to go, time to go back to the nursing home. I've said nothing, but when our emotions are so intertwined, without words, without seeing, you know my energies, how I am feeling. You grab me, pull me into you with your arm that works. You smother me in tearful kisses, 'I love you, I love you, I love you' you repeat these precious words and I can't hold myself together for a while. How can I take you back??

Dark and raining, driving back from you was like a cord getting tighter and tighter around my heart the further I drive from you. You kept asking me to come back in later on tonight, 'please, please come back in...'

And I cry the whole way home.

Christmas was more than wonderful, better than magical, it was my family, together under one roof. It was smiles and laughter and you on the sofa listening to presents being opened by our excited and gleeful kids. It was Christmas dinner on our laps, an extra, your carer, and it was sheer delight.

It could not have gone better, your smile- your gorgeous innocent smile that spread across your face when you knew you were home and did not leave your lips till the car on the way home 48 hours later.

You had kids jumping on you in bed this morning, you had me just hopelessly, helplessly in love, I couldn't take my eyes off you.

It was the best Christmas ever. Your first overnight stay.

I have some huge thank yous to say to family, friends and carers who made it possible.

Now, with a vengeance I'm going to get you home...because that's where you belong. That's how it should be.

Alex, Thank you for who you are, you may be very different, very changed, but I am completely head over heels in love with you my angel.

Let's get you home...

Me xxxxxxxxxxxxxxxx

Saturday, 22 December 2012

Dear Alex, Too good to be true...

December 23 rd 2012

Dear Alex,

Shaking in disbelief and anger, wiping clumsily tears streaming from my face, I struggle to see the road in the dark, through tears and rain. I've just found out you may not be able to come back for Christmas after all. And after the months of trying to make it happen, and it was so close, 4 sleeps away close, and I could smell it, feel it, we nearly had it! And then the nursing home inform me they cannot provide a carer after all. At 5 pm on Saturday. Logistics meaning I can't contact anyone till Christmas eve... I have to find out if I have to have a registered carer, or if a person capable but not an actual carer can actually do it.

I don't tell you, I can't break your heart, mine's broken enough for the both of us...

So instead of focussing on something to look forward to (without meaning to sound too sorry for myself,) for the first time in a while...I now am flung viciously back into fight mode, racking my brain mode, uncertain and devastated.

I try and tell my pounding heart to calm, my mind not to race away with the negative possibilities, the tears of the kids when they find out daddy can't sleep over, 'sending' you back to the nursing home on Christmas night, I try. It all races, my eyes sting...

And I realise, these knock backs, these finally something's going in the right direction, then crash! Fallen. Broken. Wrung. My reaction tonight shows me I can't take much more.

I just need you home.

I just am staggering on, and I was so excited about Christmas, everyone's seen me with a silly grin on my face all week...I was fully revelling in the good happening at Christmas, the fact I'd have my whole family under one roof...

I have to wait till Christmas eve to find out now.

Thanks to everyone who's offered advice and tried to help, I was so lifted by people's reactions and efforts to help...thank you...

Me xxxxxxxxxxxxxxxxx

Thought for the Day #3

With Christmas approaching, 2012 nearly over, here is my Thought for the Day this week...

Friday, 21 December 2012

Dear Alex, My Christmas present.

January 2012.

December 21st 2012

Dear Alex,

Simple things are the most saturating and nourishing of the soul... I love watching our kids sleep, and as we all sleep in the same room, I sometimes sit in bed watching them, their chests slowly heaving up and down breathing, eyes flicker from time to time, dreaming of a big day had and the fact it's 4 sleeps till Christmas! Sighs and flips and arms that stretch and mouths that press together then relax.

I get you sleeping here in 4 sleeps! That's my Christmas present! And the silly thing is, for the first time
In years, I feel that tingle of excitement like a child, and a smile inside as I know what's coming...

You weren't with us last Christmas, in fact we were all still in france, you were still in a deep coma and I could only visit you for an hour in the ICU... I made it through the day, it was strange, on my own with the kids. Your mum and dad were there but did the other shift to see you. I remember finally getting the kids in bed. I'd been strong most of the day, I'd videod the kids opening their presents for you to listen to. I made it through Christmas day, not knowing if you would...With the kids finally in bed, I walked out of the house, sat in the cold Winter air and cried till I was sick.

So this Christmas is pure joy, sheer delight and wealth, you at home, at home! And for a night! I'm sure I'll lose it to stress and a houseful and a carer and over excited kids and trying to cook Christmas lunch before Boxing day and wishing it was like it always used to be... BUT, I am so blessed and so lucky to have what I have now.

What an amazing Christmas it will be!

The Christmas I never thought I'd see, a Christmas with my whole family sleeping together under one roof for the first time in 15 months! Praise the Most High!

Me xxxxxxxxxxx

Tuesday, 18 December 2012

Dear Alex, Turn around and Face Tomorrow...

Look what's arrived!!! Hospital bed for Alex!!! Surrounded by kids' drawings and photos, brilliant!

18th December 2012

Dear Alex,

Turn around and face tomorrow…

There’s people gone, there’s children dead. There’s misery there’s sorrow there’s brokenness and a broken world and hearts torn apart.

We hear something devastating, it changes us for a while, a few days, weeks stretching to months sometimes, and we feel more grateful for what we have. Appreciate the little things…

Then life bowls on, our own grizzling tired kids over excited and bickering, late on the school runs, dinner burned and milk spilt, bills piling in and arguments with our partners. Work is hard, we’re not paid enough for all we do…where’s the justice we cry, our hearts blackened by striving, eyes fogged with life’s drudgery and we quickly have lost that eureka moment. That moment when we felt the loss, felt sorrow and compassion and looked at our lives through grateful eyes…

The end of this year has brought me so much sad news. Not just the deaths of those innocent kids gunned down in a Primary school. I’ve heard of acquaintances dying, young, two fathers, a mother.

I went to bed just bawling again last night. Flashbacks of the you that you were. I lay awake and realised several things. If we look at things from a grateful platform, we look at the beauty in our lives:

If you’d given me the choice, Alex to die on the operating theatre, or deal with everything that I have to be dealing with (and it is relentless and feels futile often) actually, I’d have bitten your arm off to have the life I have now and for you to still be here and I would have said that id have done it all, a thousand times over.

And no, I don’t want a hospital bed in my dining room, meaning there’s no space downstairs, and no I don’t want a stranger in my house whom I have to feed and be around all Christmas day and night, because you need (15 months down the line) still, 24/7 care. Yes, I’d change all this in a split second to have you back as you were. BUT, place myself on that grateful platform, change that perspective, and WOW! That I get to have you home at Christmas, that we get to sleep under the same roof for the first time in 15 months. So there’s someone we don’t know in the house, I’d like to know where their family is, maybe it’s a godsend for them they get to be around a family at Christmas?

I just can’t stop thinking this morning that I am so, so lucky you are still here. And it’s given me that perspective back, that energy I was lacking in with grief-swollen eyes.

Because as I observed the other day, if I spend my whole life thinking ‘things will be better when…’ then I will never enjoy life as it is, for what it is its rich tapestry of sorrow and happiness, tears and saturating joy.

For me, 2013 is going to be a year where I work harder than ever at being happy in the present. Living in the moment because the next might not come! Every time I feel my feet slipping off that platform as life’s rubbish pulls me down, I will fight tooth and nail to rest on my grateful step…

I challenge you all to do the same! Don’t let the sad events change you for a while, let them change you forever.

Me xxxxxxxxxxxxxxxxxxx

Sunday, 16 December 2012

Dear Alex, Regrets.

17th December 2012

Dear Alex,

Nearly fifteen months since I sprinted down the beach, waded into the sea, disregarding the cold, the fact I was fully clothed. I fell down, your wedding ring in my hand, squeezing it tight in my palm fingers curled tight, refusing to let go. Waves push and throb in retreat, I wail, shoulders heaving, begging the Most High on my knees for your life... Just don't, please don't do this to the kids... I kept on for what felt like hours.

I didn't know what else to do, I was waiting for you whilst you were in the operating theatre, having been told there's no way you would make this second operation...

And look at you now, I well up with tears of pride as I watch you drink, with some encouragement, a cup of tea by yourself...

You still have no capacity to form short term memory, still don't seem to have the insight the drive or motivation to help yourself, unaware you were once so very, very different.

But yet your love for me feels equally as strong, not at all changed or different.

And it's strange all this. I walk around doing what I am supposed to be doing, or think I'm supposed to be doing! And I wonder sometimes how I feel about it all? I suppose I spend so much time having to get on with it, having to do things that some of me still doesn't 'get' it.

I've learned that I have to try and not think about you all the time, I need to have a few minutes out of the day not thinking about you or what I need to be doing for you or how I am going to do it...

Mitzi's gymnastics show this afternoon meant I had some mental time out. Until my eyes well and I realise you'll never see the kids' faces again, let alone witness what they can do. And all the couples there and you're in a nursing home, and how much I miss you, and how can it be that I'll never get you back... then I try and pull myself back into the here and now, because if I never appreciate what is going on in front of my eyes, feel the pride in seeing Mitzi do her gymnastics, really see things and feel them and enjoy them, then I'll be spending my whole life living through sad eyes focussing on the regrets and grief of life...And I'll miss life...

See you in the morning my angel,

Me xxxxxxxxxxxxxxxx

Saturday, 15 December 2012

Thought for the day, week #2

In light of this week's devastating news, heartache is rife in Connecticut.

I have no words of comfort, I just hope each one has emotional support from true friends, as that is invaluable at a time like this.

My thought for the day is something I read:

"The friend who can stay silent with us in a moment of confusion or despair, who can stay with us in an hour of grief or bereavement, who can tolerate not knowing...not healing... not curing, that is a friend indeed" HENRI NOUWEN

My prayers and thoughts for them are for strength and healing...

Thursday, 13 December 2012

Dear Alex, Bit scared...

13th December 2012

Dear Alex,

Beauty, breathtaking and breath-giving, inhale icy air, breathe out mist and revel in leaves outlined white, silvery dust floating in bitter air, spider webs promiscuously draped everywhere, takeover in their white silver elegance…

It took so long to get to school this morning, drinking in all the beauty of the frost, heavy, beautiful and leaving everything in white dress.

It was home visit day yesterday for you Alex, although today you do not remember you were home yesterday. We had the most incredible day. Picked the kids up from school, and something changed.

I realised, Monty can’t cope with you. After school, he hid till I sought him in the playground, then chastised me for bringing you, it was 'embarrassing' and I was a crap mum for having done it. He stormed off, stomping the route home. I am back to earth with a thud on icy ground. When we get home, the noise, five people needing me to do things, you’re drenched. I have to change you, there’s a knock at the door, one of the kids disregards my instruction not to open the door, the noise escalates, they grizzle, they demand, Monty scowls at me, tells you not to talk to him, 'just shut up dad’ whenever you call his name. It’s a yo-yo kind of grieving for him. The dad he had, knew and adored is not there. But you are still here, his child-like hope that you’ll pop back to how you were before, he keeps secretly deep down hoping, but every time he sees you he has to confront it’s not happened yet, you’re not the dad he wants…I’m not blaming him for how he’s feeling, or the fact he’s angry at me about it. I just don’t know what to do. Other than love him, wrap him up in mummy unconditional love and let him go through it, reassuring him.

I flip. I buckle, I shout, I bend, I cry.

This is no easy path. You have to come home, you will never progress if you’re not a home. I also have to protect and look after four kids, who, young and ‘fatherless’ (in that sense) need me all the more.

Today I ache, you’re so heavy to push, and my back is in agony from lifting, turning, pushing.

But, do you know what, it’s not about me. It’s about you and the kids. That’s all.

I have to cope. No excuses, no nothing, just have to!

Bit scared,

Me xxxxxxxxxxxxxx

Tuesday, 11 December 2012

Dear Alex, Your Christmas wish...

11thDecember 2012

Dear Alex,

A tingling feeling,not strong, not overpowering, not excitement, but a little like that. Just a tiny grumble, something, maybe good afoot? I don’t know why I feel it, but if I tune in to me, to God, to nature and the Most High’s omnipotence, omnipresence, I think I feel it. I don’t know how or why…

Mood reflected in the weather, fog and heavy mist curse my journey this morning. I arrive to you, you're surprised, and you surprise me even more by saying ‘oh, you’re in early’ it’s half and hour earlier than I usually manage, so I’m amazed you noticed. Then as I kiss you and fling myself in your arms, your face crumples, you begin to cry saying ‘oh thank goodness my baby is here, my baby’s here’

I can’t say I’m leaping around on cloud nine at the moment. The house situation and desperation for one worsens, becomes more desperate with every passing day. I HAVE to get you home. Only I don’t have a home you could live in! Every day passes tears my heart a little more. So much so it aches permanently across my chest. I ask you what you want for Christmas ‘To be at home’ is your reply, your brow locks, eyes close, tears pour as I cuddle you into me.

Oh baby, I have no answers. I have NO answers. And this is akin to mental torture. In fact it is mental torture!

I keep searching, seeking solutions, racking my brains. I now have a wonderful OT on my side, who can see the need for you to be at home, how you would progress so much more, how the family needs it. She’s doing all she can too, and we nearly have overnight stays in place as a result! Which is my short-term aim. Start with what is possible, an overnight/weekend stay. Then tackle the impossible, the house and long-term when I have the short term in place. It’s the only thing I can do.

I said to a friend the other day it’s like scratching at a wall with a feather, trying to get to the other side. It feels that impossible all this!

I just need to trust, request, pray, hope and plead. I’ve been provided with this house, when I had 3 weeks notice to get out of the first house we moved back to England into. I’ve been provided with ramps, my neighbour just so happened to have them in her garage! And a car. Exactly at the right times. Although I have to admit, the solution to an accessible house feels very late already in coming!

This is my prayer, a home for all my family to live in together.

I love you Alex, I’m trying…

Me xxxxxxxxxxxxxx

Sunday, 9 December 2012

#PAPS Diary of a Benefits Scrounger...


Righteo, my bestest blogging friend in the whole wide world ever, is Superamazingmum.

We have discussed the fact that these days most blogs are trawling through endless reviews, a bit like constant adverts and no's a shame, we're losing the passion for writing it seems... But what's this? Superamazingmum has set up #PAPS? So, we check out blogs, find one we enjoyed, for the fact it's not a review, and pimp it.

Here is the one I am pimping,

Because reading it, I keep up-to-date with the world I now find myself in.

Because the blogger writes coherently, unashamedly about real issues in Britain today, about real people who when we live a 'normal' life, we forget about and imagine exist miles away, not in our own back yard...

Because it instigates emotion and the want to take action. It's emotive and inspiring...Please give the blog a read...

And listen to real people and real issues of people with disabilites.

Saturday, 8 December 2012

Back by popular request: Thought for the Day...#1

I am re-starting my Thought for the Day!! Hooooorah! I hear every last one of you cry...

Shhhhhhhhhh now,

Here's the first...

So when you're feeling the pressure this week, take a second to step back and readdress that balance!!

Wednesday, 5 December 2012

Dear Alex, Readdressing The Balance.

Lola and her Daddy x

4th December 2012

Dear Alex,

Fourteen months today. Drawing a bath, plop in bath bomb, given to me by a friend with instructions to ‘chill out for a few minutes!’. I follow orders. I stop. I’m not good at baths. Yes, I wash (!), but a bath, well, you have to sit still, worse, lie still, and I don’t really do sitting, or ‘still’…so I change my own record, I stop, lie and soak in the bath bomb bath. I manage twenty minutes (a record I think!). a personal best!

Mini starts from the bomb cling to wet skin, float carelessly in water deep and warm. A million thoughts cross my mind. I let them wash over me, and decide on one that enters it, ‘readdress’.

I’ve been slipping, been dragging boulders of expectation that a system will work, of desperation watching you regress, of a boy who’s lost the dad that he knew and is angry and who cries in his sleep and sobs helplessly at times ‘but not over dad, mum’ in the day. Boulders too large, a body too tired to carry them. And I realise, I need to let go of them. I need to move forward. I’m dredging through mud and churning up more mud. I need to readdress the balance.

I am the first one to say that if you can not change other people, or if you cannot change a situation, you need to find what you CAN do, and that is always, that you have the power to change how you deal with it. So do I heed my own advice? Well, I have to!

I can’t change the system, the fact that it is like this for me, means it’s the same, maybe even worse for others. There’s no way I am unique in this. I need to change how I deal with it. So will expect it, expect it to be a nightmare, that things will not easily get done, that I will be forced to speak to 18 different people or organisations before I even start on the right track! If I expect the worst-I can only be pleasantly surprised, well probably drop dead on the spot actually, if something goes right…

Is this pessimistic?? I don’t actually think so, I’m changing my expectations, expecting nothing, so anything more is a bonus! It’s realistic. It’s helping me not to have a nervous breakdown!

Lets face it we are all busy, we all have things that do not work out. And I bet you anything when you ask a friend/colleague tomorrow how they’re doing, the response will be ‘oh, you know, busy!’. Why do we all have this need to prove how busy we are? I’d love to hear someone say, ‘busy, but do you know what, how amazing it is that I have arms to do what I have to do, that I can speak coherently to you now, enough that you understand me, that I am going to go home to a home, a bed, warmth and food tonight..’ tell you what, I’d drop dead on the spot again!

So that’s me, Alex, readdressing, stopping the whinge, ploughing on, battling red tape and systems and holding on to the fact that you are still here and thank goodness I get to fight this for you!!

Readdressing, my word for the week!

I love you Alex Wood, I am such a lucky girl and I am back, boulder free and readdressed!

Me xxxxxxxxxxxxxxxxxx

Tuesday, 4 December 2012

Dear Alex, WHY??

Tarzan Lola in the garden in France...

4th December 2012

Dear Alex,

A day at home (I’m coming in after school with the kids), of doing things and washing of catching up and cooking. Mending the washing machine, cupboard door repaired, curtain rail fallen down, and I do it, knots in the pits of my stomach, tightness in my chest, with one word flashing like a Hollywood banner blinking on and off angrily, the word is ‘WHY?’.

Not why has this happened, but why all this surrounding you, why the nightmare, the battle constant and wearing. The things I am trying to facilitate, which should be straightforward. Everything feels like a minefield, I started trying to get over night stays in place at least 4 weeks ago. Everyday I have spent since then trying to find the right team of people, the, then, right person who in fact won’t deal with it because it’s not been referred by the right person yet. Who in turn tells me they can't refer it yet because they had never even heard of you, because the person who was supposed to do it, didn’t, or people wondering how it is that I am ringing because normally it supposed to be someone from the place you're in, or acting on my behalf (who doesn’t exist) it shouldn’t be down to me (poor me!) but they would have to wait till so and so rang them with whatever they were supposed to ring them with… well you can see can't you?? Everyday, for a month I have had this, and just when I felt I was getting somewhere, everything starts all over again as they decide in fact, you need a reassessment, because in the time its taken to get that far, you have deteriorated, regressed, and you’ll need other equipment now as a result…and AGGGRRRRHHHHHHHHHHHHHHHHHHHHHHH!!!!!

I’m physically exhausted- whenever I am with you I am encouraging you, correcting you, helping your position, your posture, telling you to keep your eyes open, they are closed almost all the time these days (I feel as though you've given up). I try and help you with your speech, it's incomprehensible without the right input…and the list goes on. And so I work at you, on you, for you…but it feels like I am getting nowhere, and it all feels like such a race against time as I watch you regressing before my so-deeply-in-love-with-you eyes.

And still no news, nothing about a house…

So I take a second to try and unravel myself from the taught grip of troubles, always trying to take a moment to give thanks. That I have a phone, a paid phone bill which means I can at least make the calls…that I have ears that hear, the ability to speak, hands to dial the numbers! Well, it’s digging deep, but when you think how some people live…

Thank you that you got to come home yesterday, thank you for Mitzi flinging herself in your arms as you pick them up from school for the first time! That your smile at passing the day on our sofa at home, never left your lips…for all these things I give thanks and I am blessed…

But please, please, just a little glimmer…that’s all I am after!

See you with the kids in a few hours...

Me xxxxxxxxxxxxxxxx

Friday, 30 November 2012

Dear Alex, A Race Against Time...

Mitzi and chocolate cake mix make acquaintance...

November 30th 2012

Dear Alex,

Breath mist, frost White grass, crisp under foot. Five mouths breathe out bursts of steam. The walk to school fresh, hats gloves layering up the porridge full stomachs of four finally ready for the school run kids. The dog leaps around barking his presence, lead and 'oh alright then dog, come on...'

I can handle the cold when it's bright and when the moon dipping down, sets way for the sun climbing ever higher in the sky. Shadows of wildlife darting, chasing through bare trees where life and green and colour used to sit. Silhouette trees reaching down frost captured ground. It's a beautiful drive this morning to see you.

It's a constant battle at the moment to not keep staring into the bad things going on, and losing my appreciation for the incredible good things. A car, well how incredible? I would never have made the journey in the other car. Yet the length of the drive, the toll that is taking, the fact it means I can't bring you home anymore is overtaking the fact that someone provided me with the means to come and
visit you. And I feel such guilt.

They are reassessing you, the people I have finally tracked down who supply the equipment and facilitate you coming home. I thought I was getting the equipment and it was just a matter of time. But no, now they are reassessing and why? Because the nursing home does everything for you, you are hoisted and do not transfer using the stand that you did so well in at the O.C.E, so they feel you have regressed physically. Without the adequate speech therapy input, your speech is almost incomprehensible at present. So they are reassessing you. Now to see if you actually can do the visits... I just am in shock, I think, that so much can be like this... And I keep thinking to myself there must be some lesson I am supposed to be learning in all this... Patience? I've been patient! Self control? I've had that until now, but this might just make me flip. I just cannot see why everything, everything surrounding you is such an immense battle... There is something NOT right about that...

And now it's the weekend and I can't do anything, surprisingly enough the people who are coming out to assess you (who
I have to arrange this with, and goodness only knows when they can make an appointment
) were not in the office today either! So I couldn't speak to them either...

Come on God, throw me a lifeline...! Just a little something ...please?

I do feel like it's a race against time, I do feel the pressure of that, because you will not progress, in fact are regressing, and I can't allow that...I need to fight for you to come back to me.

And honestly, I don't have any solutions and I feel trapped.

I shall write a list of the good things tonight, I'll focus on that for a while rather than feeling so overwhelmed by the negativity...

I wish you were here or able enough to encourage me or help me or just to make me a cup of tea...

Me xxxxxxxxxxxxxx

Thursday, 29 November 2012

Dear Alex, Running on Marbles...

A nearly 2-year-old Monty

November 29th 2012

Dear Alex,

Slow cooker, left over veg, chickpeas, stock and an on switch…dinner done, I can now leap into the car and spend the almost hour (if not longer depending on traffic) getting to you.

It’s another crying myself to sleep phase, body churning round a need for you as you once were, something I know I never will have.

Monty is also struggling too at them moment. He’s awake a lot in the night. 

I am trying to reel myself back in. I have spent a fortnight making calls and trying to organise hydrotherapy and over night stays, it’s Friday tomorrow and I am still not much closer to a solution. I have had that 'running on marbles' feeling all week, as it speeds along and I still have no answers… my ear aches from spending hours everyday on the phone trying to organise it, speaking to so many individuals, and getting nowhere. And then the small things, that happen, just feel phenomenally overpowering. I just feel bulldozed at the moment!

Fourteen months of letters sit in files on the computer, some published, others between you and me. Fourteen months. I was watching back over the videos I used to make of the kids for you when you were in a coma. Goodness the kids have grown. They were so much smaller, so much younger. They were so young when this happened.

I went into school to chat to each of their classes, as you are coming home on Monday (although this is so impossible at the moment, with the hour it takes me to get to you, by the time I have succeeded in getting you into the car, then back home, then got you back in the car, driven you back then driven home…I am looking at 5 hours (and that’s not even you having time at home)). I am determined to do it, but I am just so distressed it takes so long, that you are so far away. But Monday I am doing it, the kids can come in the car to drop you back. I spoke to their classes about your accident, about how you are now. I did it because you are coming to pick them up from school on Monday. It’s good to ask questions, it’s good to be curious, of course they will be, and I didn’t want the kids to feel overwhelmed by others asking them questions, or isolated because you are so different from their dads. I also wanted our kids to feel supported and see that talking about things is good, positive.

I’m trying not to run ahead and get frustrated that nothing’s happening as I want or need it to. These lessons are hard! All I can do though I suppose is what I am doing, trying. I panic that I’m not doing enough for you, fast enough, that seconds count and I have to have it all sorted for you immediately. I worry that the longer it goes on, the trying to get overnight stays and hydrotherapy amongst other things, extra speech therapy (your speech has regressed so much, there's speech therapy for a few minutes once a week here, so I have to find out a way of getting you more), that time counts, is so vital, I worry you will deteriorate. In writing this I have just seen the word ‘worry’ too many times. It’s eating away my energy.

I can see from this letter I need to breathe. Tell myself a few extra days, a week or so will not kill anyone…perhaps rather than thinking I need things arranged and happening yesterday, putting a longer time scale on it, which in turn may lower my expectations on myself and time scales…less worry?!

Well, on that note, Monty is coming in with me tomorrow, he needs time with me, time just the three of us…

See you in the morning,

Me xxxxxxxxxxxxxx

Tuesday, 27 November 2012

Dear Alex, A beautiful 5 minutes (video)

This was a few weeks go now and it was just a lovely moment between Mitzi (off school with poorly ear) and her daddy...I'm sure you'll agree...

Monday, 26 November 2012

Dear Alex, Blue Moon..

Alex and a snuggled baby Esmie in the front carrier...

November 26th 2012

Dear Alex,

I went at it all guns blazing this morning. Wet Monday morning, kids dropped off, a l’attack! I had had enough of last week. With the sickness bug hitting me hard, a tooth out which became very infected and which made me sick too, I was at a low ebb and hardly able to drive to see you, let alone do anything else. But there’s no days off in my household!

I spend the whole morning making phone calls, and waiting for people to call me back, I had either spoken to the wrong person, the nearly right person, or the whole wrong department- you know how it works! But after thirteen phone calls, and eventually speaking to the right people, the equipment is about to be ordered for your over night stays…making it imminent!!

I felt strong and proud as I race in to see you (a friend is to pick up the kids tonight after school). A real accomplishment! And it has got me somewhere, some good news to finally tell you, and the path laid for the next step.

It takes over an hour to get home tonight, traffic slow, rain and dark and grey the route. But I glance left, a slip in the nearly black night sky of yellow, of light. White yellow clouds rise and tower. Just a slit, like an eye opening. Several messages from people urging me to hold out for a house here, not to accept the place miles away have given me that little bit of strength, of guidance. In a situation where I am left to decide most everything alone, the advice is welcomed. It is a risk, I am told a place like I am looking for comes up ‘once in a blue moon…’

So guess what? I am praying for a blue moon! (Not a smurf pulling a moony)..

First up, let’s get you home for overnight stays my angel…

Me xxxxxxxxxxxxx

Sunday, 25 November 2012

Dear Alex, A Hidden Treasure...

Alex at Tarnos, France...

November 25th 2012

Dear Alex,

In your presence, I am me, I am yours. In your presence I am one again, whole again. It’s you, and only you who has ever made me, me. Sometimes realising how different things are now makes me rock, reel in shock, it hits me still so hard. But the swings of the gong are less frequent.

Four heads, tired out, read out, laughed out, run about and eaten out, sleep. Some snore a little dreaming of the day they’ve had. Tucked up and knowing their safety. It must be great being a child, knowing you’re safe every night, having someone to tuck you in, read to you, sing to you (or may be not?!) and turn out the after prayers light.

I don’t know how I managed it, but I put a play list of music on. It ran through randomly all the soundtracks on the computer. Your voice comes on, chatting with the kids, laughing in the car, recording a silly anecdote on the phone it must have been. A little sound treasure. Like a jewel, sparkling and buried, unearthed and longed for. I hear your voice- I had forgotten how it sounded before. I heard you…I shall treasure that little 45 second voice jewel…

Sunday, the day I do not come in. I have to bear through missing you, not being with you. But it does the kids good, and I suppose not having to be somewhere for just one day a week must do me some good. The funny thing is, I’m not sure it does. People say it wouldn’t matter if I didn’t go in so much, I should think about having a day off, but to be honest, I am not doing it to be a martyr, there’s just such a need to be with you, that it’s harder to think of not being there…

This week, who knows what it will bring?

I will be there with you tomorrow, after the school drop off and hour commute…it’s long, but at least I get to listen to French radio. A little silver lining on a dark long commute to see you cloud…

I love you Alex Wood,

Your wife, me xxxxxxxxxxxxxx

Saturday, 24 November 2012

Dear Alex, Decisions...

I keep finding these old pictures...a very young Monty and Lola...

24th November 2012

Dear Alex,

The good news is, there may be a house suitable, the bad news is, it’s an hour from here, we would have to start all over again…

If I am honest, I am in two minds. We could start all over again, but then to lose what we have here, the friends, the support, the church, the school. The bit of stability I have worked so hard to maintain for the kids. Haven’t they been through enough?

And if I move the family again, you would be moving home, yes, but there’s going to be a huge adaptation process, the kids will realise that having you home is going to be very consuming time wise for me. I won’t be as disposable for them as I am. My attention wont be solely for them when we are all in the house, I’ll have a lot of caring to do for you. So do I move everyone? Start all over, new schools, new friends, new area, you move back and the kids feel pushed out or find it difficult.

You have mood swings, your anger escalates and has no lid you can put on, and you shout, yell, lash out, strike anyone in your path…

And you living at home again, isn’t going to be living with the same daddy they had before.

I want you home, we will have to adapt, and we will, I’ll make sure the kids are ok, we will talk, and I’ll help them through the adjustment. But I want to do that in the safety of where we live now. The problem is, there’s no houses here for that…

So it looks like I have no choice…

I have no idea what to do. If I want you home (and I DO!!) then I am going to have to move-trouble is, I feel like it might be the straw that broke the camel’s back…

The ridiculous thing is, you have progressed so much recently! Your speech so much clearer, more lucid, you even remembered we had a new car!! AMAZING! This is SUCH progress! You retained some information, a little short-term memory! I should be revelling in this! Not allowing myself to become lost in the other stresses...

The flip side is, you call for me, all the time, you don’t understand why I cannot be there. You cry when I arrive, cry when I leave, begging me to take you home with me. You have no idea why I can’t…

All I can do is what I am doing, pushing to get you home, being with you every hour I can be…

I am going to bring you home, we just need to hold out a little longer baby…

Me xxxxxxxxxxxxxx

Tuesday, 20 November 2012

Dear Alex, "Do not worry about tomorrow..."

An early visit, back in France, Alex's 33rd Birthday...

November 19th 2012

Dear Alex,

Coarse ground coffee, smell potent and rich, hot milk, frothy, sugared and it’s ready. You smell, inhale the taste to come, reach to the table, slightly jerkily bring it to where you anticipate your mouth to be. It’s getting there, we’re getting there, but there’s still a very long way to go…

It’s become about living in the present, offering praise, thanks, gratitude for the very moment we are in. life restricts, it takes away, it leaves you fraught and breathless and worrying for the next day. The future too much sometimes when we face it with all the what ifs and maybes and can you imagine ifs…

Someone once said “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” He was right. I am learning this message. Tomorrow has many worries, it can overwhelm you so much it scars the moment, stifles any freedom, joy, appreciation. Jesus had it sussed!

The council have us in band 2 for housing-brief explanation; not really that urgent. This is my next step. I got you safely to Chalfont Lodge, now you unsettle as you realise it’s unfamiliar, readjusting and unable to make sense. It’s an hour from me, the drives are long. Each time I have to leave, you cry, sob, asking me to take you home. Shards of burning pain and helplessness, eyes sting with fear, anxiety, sore with repressed tears, trying to be strong for the children, for you.

I need the council to listen, we need to be in band 1, this is an urgent housing need, how can they NOT see that? Fobbing me off as a not-so-urgent case.

I may have to start again, move out of area, there is just not a house here.

So, with all that facing me, I am trying to be brave. I am (with having had a tooth extracted yesterday morning!) in pain and tired. A long drive to do now to see you.

I will trust, I will ask, I will pray, I will hope…

I will not be crushed, I will thank God for all the things I do have, the moments that are beautiful, the leaves blowing in sudden arrays of dancing yellow, gold, brown. The chitter chatter of four beautiful souls around a table, porridge warm, hot tea in the pot. I will give thanks for the friends that wink as I pass by, who message me, support me who listen. I will give thanks for the food I have, the day that I have been given.

And I will keep giving thanks, because that is living in the moment, life not racing by in the same way, over before you know it.

You can’t catch life as it races by- you have to stand firm in it, in the present, by being grateful for each second of what we are blessed with. That’s what slows it down, gives you a ‘grip’…

So as I begin the next quest-finding a house, imploring the council to take my situation seriously, moving me up into band 1. Maybe even moving again…I will continue to give thanks.

Me xxxxxxxxxxxxxxxxx

Saturday, 17 November 2012

Dear Alex, An Anonymous Donation...

Mitzi moo, missing her daddy lots at the moment...

17th November 2012

Dear Alex,

Fruit tea in a pot, glass cup, screen and keyboard. Candles lit, four children sleep, hair still wet from bath. This time of year, so dark, always night! Yet for us, there’s the sense that this is the lying down of something, shedding of the old, sad, lost, but a new journey together, a new family set up. And only we will know what it will mean for us to be family, to be together again, so long separated, so long our lives ripped apart.

Hydrotherapy is starting for you next week! I am taking you, because I have a car now I can take you in. An amazing thing happened just a few weeks ago. Somebody, who I do not know, who wanted to remain anonymous, donated enough money to buy us a new car that we can all get into. It was delivered Thursday night. I had been praying for a car, somehow to be able to acquire one (I had NO idea how!) And before I had to do the hour long drives to where you have been moved to, A nursing home in Amersham. I got it Thursday night! Not a second too early, a second too late, just perfect timing. It’s incredible. How can that be?? Someone did that for us, and the timing, just amazing, Most High timing.

We don’t need things before we need them, do we?! And it’s about trusting there’s a plan, a purpose, even when we cannot see. I have decided not to get distressed, torn up, by the fact there is NO house, but trust that somehow the Most High will hear, listen, provide, I have the car to prove He hears! You are ready to be at home, poison darts sent firing into my heart each time I am with you at the moment you ask to come home with me…"Not yet, my angel, but soon... trust me” I have to say.

I am moving the dining table and chairs into the garage, and a hospital bed should be arriving next week. At least this way you can have an overnight stay.

The move has gone well to the nursing home, you seem unperturbed for the moment. Funnily enough it’s our little Mitzi moo who is the most unsettled. She hates leaving you, she cries and says how much she wants you home. She lingers in the door way after giving you a kiss and a cuddle, watching you to check you're not upset we are going. She runs to inform the staff we are leaving, “please can you check on Daddy because we have to go now?” she requests. Her bottom lip quivers, big fat sad tears of missing her daddy, no matter how you are now, you’re her daddy and she wants you home, roll down rounded red cheeks.

We will get you home my angel. We need to get on with our lives as a family unit now. Very different it will be, but a new venture we all need to be a part of.

…Oh to have you home…

me xxxxxxxxxxxxxx

Thursday, 15 November 2012

Dear Alex, I Promise...

15th November 2012

Dear Alex,

Quorn tikka masala, microwaved and done. I finally sit, and drum the keys...Time to think, time to write, time to eat...It’s all finished now at the O.C.E, your last sleep there and then to Amersham to a care home with rehabilitation tomorrow.  The end of intensive reeducation, but the Home is comfortable, the staff friendly and good at what they do. .. If only I could have you home…

I await a house; I just know you need to be home. I know too it will be a huge adjustment, nothing will really prepare me for it, I’ll just have to do my best. You wake in the night; I’ll have to be there to comfort you. You get distressed at times in the day, you’ll need comfort, changing, help, rest, stimulation…I promise I would try so hard to get it right.

We will certainly need to adjust, adapt. For the moment, as the staff are keen to support you having overnight stays, we have worked out a way of getting a hospital bed in the dining room, I’ll put the table and chairs in the garage. It’s the only way, whilst we wait to be re-housed.

Tomorrow you move, I’ll be meeting you there. It’s been an emotional day, leaving the O.C.E. the therapists and staff have been just wonderful. I keep telling you one day we will walk back in there and thank them, together, you standing tall and strong...

I sat with you today reminiscing how you were when you first arrived. Hoisted in and out of bed, not able to hold up your head, you would sit flopped over in the chair. Fed through a gastric peg, sleeping still a lot. You couldn’t talk, let alone even make a noise at that time. You had no control over movements or hand gestures. Still having epileptic fits. You were shaky, trembled a great deal.

Now as I look at you today, feeding you your pureed lunch, I cannot believe how far you have come. Eating pureed food, the occasional seizure, fits are under control. You no longer tremble, you hold your head up proud! You sit for minutes, alone, unaided…they have you walking, three support you, with a huge walking frame, but you get upright, you practice. And you tell me you love me, I have that! I have that wonderful, wonderful that! To hear you love me, how lucky am I? To have your voice again, your smile, your laugh…You cuddle me with the one arm that works, I have your touch…

No, you’re not exactly you, who you were, or how you were, yes it’s all totally changed, the dynamics, well, it’s all changed, but my love for you, your love for me has not…

I have you, different, but a new, different you, and oh how I am blessed…

I love you Alex Wood, let’s keep pushing, keep going, keep on till you’re home.

Me xxxxxxxxxxxx

Monday, 12 November 2012

Dear Alex, Monday mornings

This was Alex with a new born Esmie Rose...2008

11th November 2012

Dear Alex,

Day of home and chores and children and friends round. Day of church going, lunch slow cooked, morning’s preparation left to stew. Day of no you. No visit.

I began the 'Sunday homeday' with the kids a few months ago, for them. A day where they don’t have to rush anywhere, do anything in particular. I started it because I thought it was best for them.

I’ve got used to it, but the Monday I am speed, I am haste and I am with you as soon as I can be through the school drop off and morning traffic.

We have a fresh coffee together, made by us both. I get you to focus, straighten your head, and reach for the cup. I read the headlines, your reach has improved, your orientation around this has too. I am so, so pleased…

I think, I think I feel this raw open hole is not so scary anymore. I think I feel it’s pain, no more or less than before, but I went there, I let myself fall into it, and now, I’m not so scared of it anymore.

I feel more able to help you, a renewed strength, which you in turn are picking up on and absorbing and strengthening mentally…

So Monday approaches, it’s late, I won’t sleep that well, you know, I so rarely really do. But I’d like in my dreams to see you…

See you tomorrow honey, I can not wait…

Me xxxxxxxxxxxxxxxxxx